People in My Boat

People in My Boat

My two hands dwarfed the white porcelain hotel cup. I took a sip. It was piping hot, but watered-down. I opened and closed the green folder in front of me. I wrote down “BIAPA June, 25th 2012” in the notebook I had left untouched for this special occasion. I scanned the room full of people and tables and chairs and wheelchairs and TBI swag. I really had to pee. It was three days before my 30th birthday and I still got nervous pee, which is what select members of my family and I call that uncomfortable I-have-to-go sensation that comes on right before a big event like riding my pony; the first waterski of the season; teaching my first twenty or so yoga classes; walking down an isle as someone’s bridesmaid; and now this.

“I really can’t believe I’m here,” I texted my mother.

“How is it?” she asked.

“I dunno. It’s too weird.”

“It’s good you’re there.”

A tear rolled down my cheek. This is too much, I thought. Why on earth am I here? I mean seriously, “How in the hell did my life come to this?” Oops, I said that out loud. Two people came and sat down at my table. They were nice, younger women, what you might call clinicians. One of them asked if I knew anything about CEU credits. I didn’t. I didn’t know a damn thing about any of this. I kept up the conversation as our round table filled up with people and breakfast plates and folders and coffee cups and one wheelchair. All I wanted to do was cry. Just sob, right there in the conference room of the Lancaster Marriott in front of hundreds. I knew no one—not one stinking soul at this conference. I was alone. I could bolt. Lancaster was nice, right? I could walk around downtown. Find better coffee. Text some guy. I felt the buzz of my mom’s new text in the pocket of my skirt. It was a great skirt—it had pockets. I had a great outfit. I had that. Another tear escaped. Ugh, I wiped it away. I hope my new breakfast table friends didn’t see that.

After the keynote and before the first round of presentations, I found a spacious handicapped bathroom stall. I cried. I cried because I was there on scholarship. I cried because it was a brain injury conference. I cried because my dad had a brain injury. I cried because he had a really crappy, terrible, life-changing brain injury. I cried because I missed the past, and I couldn’t even begin to imagine what this future would be. I sat down on the toilet and cried. Before I left the bathroom stall, I pulled out a compact with a tiny mirror, cleaned my mascara off with spit and some toilet paper, and put on a fresh coat. I stood up and opened the door. A woman was washing her hands at the sink. I looked at myself in the mirror, ran my fingers through my hair, and said something pleasant to the woman before leaving.

That was the first professional conference I attended for intensely personal reasons. I had applied for a scholarship to the 2012 BIAPA conference and got it. I was the daughter of a survivor and 2012 was supposed to be the year of big changes and writing books and owning it.

***

Brain injury conferences, panel discussions, groups, meetings, luncheons, and seminars are like flying to me. As a teenager, I would keep track of the number of flights I’d taken. Now I just fly. Now I just show up when there’s an opportunity to share my experience of living with my father’s brain injury. This sharing adventure—for lack of something better to call it—began with my wanting to read a story about a girl who had a dad with a TBI—or a kid with a TBI parent, at least. There was no such material. In fact, when my dad had his severe, frontal lobe, diffuse axonal brain injury in 1996, the world was still saying “head injury” and no one but Cathy Crimmins (Where is the Mango Princess) was telling the kind of TBI story I was interested in hearing. Time passed, and I never found the book I wanted to read, so I wrote it in 2012.

The birth of He Never Liked Cake threw me headfirst into learning everything I could about brain injury. As my repertoire of knowledge grew, so did my tiny circle of TBI friends, most of which I only shared a connection with via Facebook or email, but all of which were in full support of me sharing my story with others. I was finally meeting people who share a similar load of challenges. I was relating, and oh-my-goodness did it feel awesome. Opening up was scary, but the nights Eduardo and I shared in Brooklyn bars filled with tears and beers and stories about our dads are priceless. My email threads with Mark Palmer have kept me afloat. The conferences I’ve attended and the people I have connected with have reminded me of how much good you can find in this TBI world. Enough goodness to share with my mom, to fuel my career, and to help my father.

It occurred to me the other day, during a conversation with my best friend who dips her toes in the world of TBI as a speech pathologist, that the very thing that makes living with my father’s brain injury and its boatload of strife over the last 18 years easier is meeting other people with brain injuries. In a curious fashion, her speech pathology career and my yoga and writing career often cross paths in the world of TBI. We revel in sharing stories of success. We challenge ourselves to figure out how to beat the odds. We do this for people we hardly know, and although the triumphs are usually anonymous, they are always universal. And sometimes, when we kick back and hang out as great friends do, we look at each other and laugh. How did we end up here? I still don’t know, but I’m not leaving.

I might not always have the energy to help my family, my situation, or myself but it’s as though I’ve been armed with energy enough to help others. I can teach yoga to help alleviate the negatives that come with TBI. I can share my story at these conferences, panel discussions, group meetings, luncheons, and seminars. I can speak up, reach out, and meet the thousands of other people in my boat. I know there will always be days when I cry my face off because of what happened to my dad, but I have learned that the best remedy for the unfairness is meeting the daughters and sons and wives and brothers and friends of others who have been where I have been. And on the really hard days, when I know that nothing I am doing seems to be helping my father or making it any easier for my mother, I remember that I can do something to help someone else with a brain injury. That is something, especially when you feel like there is nothing.

Comments (8)

That was a very inspiring, I am  the mother that suffered a severe brain injury, my son is getting ready to go to college I want to do all I can to direct him in the right way but it has been 2 yrs and instead of getting better the deficits are increasing and my son and I were close when it happened he was 16 now 18 and he can't stand me, my deficits need him to search for education and he won't I guess typical teen, but I am working real hard so if I can in anyway help him to make it to college to improve his feelings towards me and feel better about making a great achievement. He refuses to educate himself about the brain injury but he is a smart kid and many colleges want him, so I asked if there were any way we could find scholarships or other ways to make it possible.He has become pretty depressed through his public high school so he is now working towards his diploma through a university, which is going slow what do you do when you can't make or really show the promise he holds?

For the person above asking about this site and advocacy, there are several articles on BrainLine about advocacy. Just type "Advocacy" in the BrainLine search box and you will see many resources, articles, and links. BrainLine is an all inclusive site. The four bloggers you regularly see featured on the front page are sharing personal stories to connect with the larger TBI community and to show the non-TBI public what living with a brain injury is like for individuals and families. Advocacy is very important. You might also check with the Brain Injury Association in your area. They usually advocate for better TBI resources with local and federal governments. 

A comment asked about the website and what else they were doing - further discussing their appreciation but also implying that fighting for benefits and better care is arguably over-looked. 

Having several TBI (s)  - I can say that both are equally important !  Finding this web site and its articles really, really , really helped. However, I so recognize the importance of the fight, much more those that advocate - family, caregivers. and professionals, and politicians alike.

Chris Jay 

Dear Jana;

My daughter often laments about the difficulties of having a dad with TBI (s).  Your words were very helpful as I continue on a path that approximately 30 years to find, let alone begin walking along.  

My 16 year old faces many struggles, including anger - as she compares her, my and our family's life before and after my last head injury - approx. 7 years ago.

I was once an attorney but for the past several years I I have not been able to function in that capacity any more; leaving me with figuring this mess out.

Sadly - added to the mix, my children's mommy/my amazing wife also came down with a serious case of breast cancer.

Together, things have been extremely difficult.  Gratefully, however, my marriage to my amazing wife has remained in tact - despite my TBI shortcomings.  

I am especially happy for your writing - sharing your story.  It is so very important.

Chris Jay 

Art, thank you for those words! So true and wise. It's funny what power we find when we discover the power of choice. Life will never ever cease to amaze me. I'm happy to be a member of this interweb world of meeting and supporting and informing those who have brain injury in their lives. Sometimes it's just one sentence that gets me through the next challenge. .... And that niece and I have a very, very overdue sushi date. It's coming and I cannot wait to hear of her adventures. .... I can only know what it is to be a daughter of a survivor. To all of you mothers, I cannot even fathom how much it hurts to see your children endure what my father has. I can only hope that no matter if we are blogging or speaking or providing treatment or book writing or waiver drafting or lobbying that each iota of what we do affords  brain injury more public awareness, more financial support, and more understanding. It is not ever my intention to support a "recovery" that is a proposed in a "home." 

An inspiring story, Janna. You turned nothing into something or to put it a more exacting way, you turned a horrific incident into something that garnered your wisdom and creativity into creating a more acceptable situation for all involved. Keep paddling and flowing and knowing everything happens just the way it is suppose to. There is life, or positive, and there is death, or negative.................either, or, it is your choice. One is deemed good and one is deemed unacceptable..................................but both are concrete choices. Whatever one is chosen, acceptance must become of you...............................so, choose benevolently, for thee is the keeper of thy kingdom..............even though thy reign is in upheaval if a TBI situation has entered your life, directly or indirectly...........................................!!! Art Cortis

Janna I know that finding you on fbook was a god send to my family! I reached out to you ....a total stranger for advice for my niece,whose father suffered TBI. Not only did you advise her,you took it one step further and met her! Your words of wisdom I know helped get her thru college. Our stories are very similar! I had the pleasure of hearing you speak about your journey twice and look forward to seeing you again. I will always remember you saying don't let TBI become title for life! 💚

ABI is a terrible thing. It changes your life and your loved ones life forever. I know because I am the mother of a brain injury survivor and although I can appreciate this article and understand it I question its purpose. Do you know that the programs in place for survivors like my son are being systematically watered down by our Government to save money. What are the authors of this facebook site doing about the real needs for survivors. I am in Hartford with other advocates fighting a loosing battle against DSS and our Governor to make the ABI Waiver II program as good as the ABI Waiver I that is now closed . Brain Injury is a very popular subject right now mostly because of war and football. This is a heartening story but I am trying to keep people who are injured out of institutions and back into society. Survivors need family Independent Living Skills Teachers in order to let them heal and become the best they can be. This only happens with neurotherapists teachers and families . It does not happen in a convalescent home.